Crohn's disease is a chronic inflammatory disease that affects the entire gastrointestinal tract in all its layers.The theoretical part deals with the characteristics of the disease, its causes, symptoms, complications, treatment and psychological aspects. It also touches on the needs of children and communication with a chronically ill child.At first, this work set out to achieve two goals: mapping the provision of nursing care to children with Crohn's disease in hospitals and determining the impact of Crohn's disease on the everyday life of a child. A third goal, gathering respondents' views on the possibilities of community nurses in collective institutions, was encountered during the research and was added.The empirical part was carried out using qualitative research method using semi-structured interviews both with health professionals working at pediatric wards, as well as children with Crohn's disease and their parents.Survey results show that children with Crohn's disease come in contact with health workers at various departments of health facilities. The most common early symptoms of Crohn's disease in children included abdominal pain, diarrhea with blood or mucus and failure to thrive. The most common areas affected were the gastrointestinal tract, the small intestine, the colon in one case and the rectum in another.Some workers did not know which tests or treatments their hospital prescribes to the children.They report pain as the main nursing challenge, but this did not reflect in nursing practice.In all departments, except one, there was no material on Crohn's disease, which would have been helpful to the workers.Interviews with children and parents, as well as with health workers confirmed that the disease has a socio-cultural impact on the child and those around it. The results of this diploma thesis were presented at three conferences and will be published.

La maladie de Crohn est caractérisée par l'alternance de phases de rémission et de poussées d'inflammation intestinale, de survenue imprévisible. L'objectif de la thèse était d'étudier l'effet, en terme d'activité cérébrale (IRMf), de l'incertitude dans l'anticipation de la survenue d'une douleur viscérale dans la MC en rémission. Les résultats majeurs montrent que dans la MC, cette phase est associée à une hyperactivation significative, par rapport au sujet sain, du cortex cingulaire antérieur et postérieur, de l'insula, du thalamus et de l'amygdale. Il s'agit de régions clés dans la gestion sensorielle, cognitive et émotionnelle de la douleur. En conclusion, la MC est associée à une hyperréactivité cérébrale liée au caractère incertain de la survenue d'une douleur viscérale. Ceci peut expliquer une plus grande vulnérabilité des patients face aux effets du stress sur leurs symptômes et le cours de leur maladie et l'efficacité des thérapies cognitivo-comportementales. / Crohn's disease (CD) is a chronic recurring inflammatory bowel disease, with unpredictable recurrence of flares; this unpredictability leads to great anticipatory anxiety and stress. The aim of this thesis was to study the effect, in terms of brain activity (fMRI), of uncertainty in the anticipation of visceral pain in quiescent CD. Le main results show that in CD, uncertainty is associated with hyperactivity in the anterior and posterior cingulate cortex, insula, thalamus and amygdala. These are key regions in the regulation of sensory, cognitive and emotional aspects of pain. In conclusion, CD comprises excessive cerebral reactivity linked to the uncertain character of the occurrence of visceral pain. This might account for the greater vulnerability of CD patients towards the effects of stress on their symptoms and the course of their disease, as well as the efficacy of behavioral therapies that aim at modifying the activity of limbic structures.

A doença de Crohn é uma inflamação crônica do trato gastrointestinal. O tratamento convencional é muitas vezes desapontador. Apesar da variedade de drogas disponíveis para o tratamento da doença inflamatória intestinal, tais como: salicilatos e seus derivados, corticosteróides, antibióticos e imunossupressores, nenhuma destas mostrou ser totalmente eficaz ou definitiva para o tratamento da doença e seus surtos de exacerbação. Pesquisas têm sido desenvolvidas com o objetivo de apresentar drogas mais efetivas. Dentre estas, destacam-se as drogas biológicas. O infliximabe é um anticorpo monoclonal quimérico anti-fator de necrose tumoral alfa e está indicado na doença de Crohn refratária e fistulizante. O objetivo deste estudo visa avaliar prospectivamente os resultados e efeitos colaterais precoces e tardios do uso do anti-TNF alfa no tratamento de 60 doentes com doença de Crohn, no período de julho de 1999 a dezembro de 2005. Os doentes foram tratados com anti-TNF alfa (infliximabe), na dose de 5mg/kg de peso, aplicado por via endovenosa em intervalos de dois meses. A avaliação foi realizada por protocolo clínico que classificava os quesitos: estado geral, sintomas intestinais e doença perianal em melhor, inalterado e pior, e pelo índice de atividade da doença de Cronh. Os doentes tratados com anti-TNF alfa apresentaram mediana de duração da doença de sete anos, variando de um a 28 anos entre a data do início dos sintomas e a data de início da pesquisa. 34 doentes (56,7%) já haviam sido submetidos a uma ou mais operações abdominais e 38 (63,3%) a operações orificiais. O software utilizado para a realização dos cálculos foi o SPSS® 9.0 for Windows, sendo estatisticamente significantes os testes com p<0,05. Foram aplicadas 225 doses de anti-TNF alfa, em média, 3,7 doses por paciente num período de aproximadamente cinco anos, variando de uma a 14 doses. No tratamento inicial 76% dos pacientes responderam a droga. As principais indicações para o emprego do anti-TNF alfa foram a presença de doença perianal em 36 casos (60%) e a intratabilidade clínica em 24 casos (40%). Observou-se que após a primeira dose da medicação, os doentes com mais de dez anos de doença e submetidos à operação abdominal tiveram resultado satisfatório semelhantemente aqueles doentes com menos de cinco anos de doença e não operados com p<0,05. O índice de atividade da doença de Crohn foi em média de 189,7 antes do início do tratamento e na primeira aplicação diminuiu em média para 135,4, e progressivamente ao longo das aplicações (115, 102, 109 e 88,4 até a quinta dose), sendo o resultado estatisticamente significativo. Houve efeito colateral em 40 aplicações (17,8%), sendo os efeitos principais: eritema cutâneo, dispnéia e dor abdominal. O tratamento com anti-fator de necrose tumoral alfa, obedecidas as indicações precisas, associou-se a baixo índice de efeitos colaterais graves tendo apresentado bons resultados na resolução da doença de Crohn perianal, na melhora da sintomatologia intestinal e no estado geral dos pacientes / Crohn´s disease is a chronic inflammatory disorder of the gastrointestinal tract. Conventional treatment is many times disappointing. Besides the great number of available medications to treat inflammatory bowel diseases, such as salicilates and derivatives, corticosteroids, antibiotics and immunosuppressive agents, none of them proved to be totally efficient or the ultimate treatment for inflammatory diseases and their exacerbation. Researches have been carried out to find more effective therapeutic drugs. Among these therapeutics, biologic treatments have been in evidence. Infliximab is a chimeric IgG1 monoclonal antibody against tumor necrosis factor-alpha, and is indicated for refractory luminal and fistulizing Crohns disease. The aim of this study is to prospectively evaluate the outcome, early and late adverse events, in 60 patients diagnosed with Crohn´s disease and treated with infliximab between July 1999 and December 2005. All patients were treated with anti-TNF-alpha (infliximab), 5mg/kg/dose, intravenously, each two months. Patients were clinically evaluated using a protocol that classified the evolution of the health status, intestinal symptoms and perianal disease, as better, worse or unchanged, during the treatment. Crohn´s disease activity index was also evaluated. Patients treated with anti-TNF-alpha presented a median disease duration of seven (range 1-28) years, between the beginning of the disease symptoms and the beginning of the research protocol. Thirty-four patients (56.7%) have been submitted to one or more abdominal surgeries before, and 38 (63.3%) to anal-rectum surgeries. All statistics tests were performed with computer software Statistical Package for the Social Sciences (SPSS® 9.0) for WindowsTM, and p values of less than 0.05 were considered statistically significant. Totals of 225 anti-TNF-alpha doses were administered. The mean doses administered per patient, in a period of approximately five years, were 3.7 (range 1-14) doses. After the initial treatment, 76% of the patients achieved a response. The most frequent indications for anti-TNF-alpha was perianal disease, occurring in 36 patients (60%), and clinical failure to the conventional treatment, happening in 24 patients (40%). After the first dose of anti-TNF-alpha, patients with more than 10 years of treatment and previously submitted to abdominal surgery presented a satisfactory outcome, similar to those with less than 5 years of disease and not submitted to surgery, p<0.05. Crohn´s disease activity index showed a mean index of 189.7 before treatment, that decreased to 135.4 after the first dose, and progressively decreased with the subsequent doses (means: 115, 102, 109 and 88.4, until the fifth dose, p<0.05). Adverse events were reported in 40 administrations (17,8%) from the total. The most prevalent adverse events were: rash, dyspnoea and abdominal pain. The treatment with anti-TNF-alpha, following precise indications, was associated with a low incidence of severe adverse events and presented good outcomes in the resolution of perianal Crohn´s disease, improving intestinal symptomatology and patients´ health status

Introdução: Citomegalovírus (CMV) é um DNA vírus de alta prevalência, e tem uma capacidade peculiar de infectar e permanecer integrado ao DNA das células do hospedeiro, mantendo-se na forma de infecção latente. O vírus também pode ocasionar doença, o que normalmente ocorre em pacientes imunocomprometidos, promovendo o aumento da morbidade e mortalidade nestes pacientes. As doenças inflamatórias intestinais (DII), doença de Crohn (DC) e retocolite ulcerativa (RCU), são enfermidades crônicas que afetam o trato gastrointestinal. A fisiopatologia e o tratamento destas doenças, muitas vezes, pode induzir um estado de imunossupressão. Isso incitou a ideia de que os pacientes com DII são mais susceptíveis à infecção e doença por CMV. Ainda há dúvidas e controvérsias sobre a relação entre a doença inflamatória intestinal e o CMV. Objetivos: Avaliar a frequência de infecção por CMV em pacientes com doença inflamatória intestinal, e se existe associação entre replicação viral do CMV com a atividade da DII, mediante índices clínicos e laboratoriais. Metodologia: Pacientes com DII previamente diagnosticada foram submetidos à entrevista, revisão de registros e coleta de amostras de sangue e fezes. Foram realizados os seguintes exames: pesquisa de citomegalovírus por IgG e IgM no sangue, pela técnica de reação em cadeia por polimerase (PCR) em tempo real no sangue e pela técnica de PCR qualitativa nas fezes. Estes resultados foram correlacionados com os valores de hemoglobina, proteína C-reativa, velocidade de hemossedimentação, calprotectina fecal e índices clínicos. Resultados: Quatrocentos pacientes foram elegíveis, sendo 249 com DC e 151 com RCU. No grupo de pacientes com DC, 67 apresentavam doença moderada ou grave pelo índice clínico, porém 126 se mostravam com doença ativa mediante a avaliação da calprotectina fecal. No grupo de pacientes com RCU, 21 exibiam doença moderada pelo índice clínico, mas 76 se encontravam com doença ativa, mediante a avaliação da calprotectina fecal. Drogas imunossupressoras foram amplamente utilizadas pelos pacientes, 143 pacientes com DC faziam uso de azatioprina e, destes, 48 usavam terapia combinada (anti TNF-alfa + azatioprina). Na RCU, a azatioprina foi usada por 41 pacientes e, destes, sete faziam uso de terapia combinada. Avaliando os dois grupos, 90,9% dos pacientes apresentaram anticorpos IgM contra o CMV no sangue e dez pacientes também exibiram IgG. A detecção do DNA CMV PCR em tempo real no sangue apresentou valores abaixo do limite inferior (150 cópias/mL) em todos os 400 pacientes. Enquanto isso, o DNA CMV PCR qualitativo, realizado na amostra fecal, indicou nove pacientes expressando valores positivos. Com efeito, nos 400 pacientes, identificaram-se 332 infectados sem replicação viral, 19 pacientes com replicação viral e 24 não infectados. Os pacientes com DII em uso de terapia combinada apresentaram uma chance maior de replicação viral 3,63 vezes em comparação aos pacientes que não fizeram uso deste tratamento. Conclusão: A infecção latente pelo CMV foi bastante prevalente, mas a infecção ativa foi rara. A utilização de terapia combinada, entretanto, em doentes com DII, tem associação com a replicação viral do CMV, mas sem indicar relação com a atividade inflamatória da DII / Background: Cytomegalovirus (CMV) is a highly prevalent DNA virus that has a peculiar ability to infect the host and remains integrated to his DNA as a latent infection. The virus can also appear in the form of disease, which most commonly occurs in immunocompromised patients, increasing their morbidity and mortality. Inflammatory bowel diseases (IBD), Crohn\'s disease (CD) and ulcerative colitis (UC) are chronic diseases that affect the gastrointestinal tract. The pathophysiology and treatment of these diseases often induce a state of immunosuppression, hence the assumption that patients with inflammatory bowel disease may be at greater risk for cytomegalovirus disease. However, there are still doubts and controversies about the relationship between IBD and CMV. Aim: Evaluate the frequency of CMV infection in patients with IBD correlating it with clinical and laboratorial activity indices of IBD. Methods: Patients with a previous diagnosis of IBD underwent interviews, a medical record review and collection of blood and fecal samples. The search of CMV was performed by IgG and IgM blood serology, real-time PCR in blood and qualitative PCR in feces. These results were correlated with red blood cell levels, Creactive protein, erythrocyte sedimentation rate and fecal calprotectin. Patients with CD were evaluated by Crohn\'s disease activity index and UC patients, by Truelove & Witts index. Results: Four hundred patients were eligible: 249 patients with CD and 151 with UC. In the CD group, using clinical index, 67 patients had moderate or severe disease, but 126 patients presented with active disease by evaluating fecal calprotectin. In patients with UC, 21 exhibited moderate disease by clinical index, but 76 patients presented with active disease by evaluating fecal calprotectin. Immunosuppressive drugs were widely used by patients. On CD, 143 patients of them were using azathioprine, and of these, 48 were using combo therapy (anti TNFalpha + azathioprine). On the UC, azathioprine was used in 41 patients, and seven of these were taking combo therapy. The great majority of patients (90,9%) had positive CMV IgG, ten patients had positive CMV IgM, nine patients had positive qualitative detection of CMV DNA by PCR in faeces, and in all 400 patients quantitative detection of CMV DNA by real-time PCR in blood was negative. In the 400 patients, we identified 332 CMV infected without viral replication, 19 patients CMV infected with viral replication (active infection) and 24 non-infected CMV patients. Analyzing the 19 patients with active infection, we only found an association with the use of combo therapy (anti TNF-alpha + azathioprine), and patients on combo therapy have a viral replication chance 3.63 times compared to patients who do not use this treatment. Conclusion: Latent cytomegalovirus infection is extremely frequent in the inflammatory bowel disease population, but the active cytomegalovirus infection is rare; and the use of combination therapy in patients with IBD is associated with viral replication of CMV, but without presenting relation to inflammatory activity of IBD

Submitted by Renata Lopes (renatasil82@gmail.com) on 2016-09-26T14:39:58Z No. of bitstreams: 1 joseeugenioriosriccijunior.pdf: 958378 bytes, checksum: f20499edf79931ac9fe901f9233cd200 (MD5) / Approved for entry into archive by Diamantino Mayra (mayra.diamantino@ufjf.edu.br) on 2016-09-26T20:34:06Z (GMT) No. of bitstreams: 1 joseeugenioriosriccijunior.pdf: 958378 bytes, checksum: f20499edf79931ac9fe901f9233cd200 (MD5) / Made available in DSpace on 2016-09-26T20:34:06Z (GMT). No. of bitstreams: 1 joseeugenioriosriccijunior.pdf: 958378 bytes, checksum: f20499edf79931ac9fe901f9233cd200 (MD5) Previous issue date: 2016-08-12 / O supercrescimento bacteriano do intestino delgado (SCBID) é definido como um aumento no número e/ou alteração no tipo de bactérias no intestino delgado. Na sua patogênese incluem dano à válvula ileocecal e anormalidades anatômicas, comuns na doença de Crohn (DC). O presente estudo tem como objetivo estudar a prevalência e preditores de SCBID em pacientes com DC, assim como avaliar a relação entre SCBID e inflamação sistêmica e/ou intestinal. Neste estudo transversal, entre Junho de 2013 e Janeiro de 2015, 92 pacientes com DC e 97 controles com queixas gastrointestinais não crônicas foram avaliados quanto à presença de SCBID usando o teste respiratório (TR) com hidrogênio e metano exalados. Regressão logística multivariada foi realizada para investigar a potencial associação entre SCBID com dados demográficos, características da doença, marcadores sistêmicos de inflamação (proteína C reativa - PCR - e velocidade de hemossedimentação de eritrócitos - VHS), e biomarcador fecal de inflamação intestinal (calprotectina fecal - CF). A taxa de SCBID foi significativamente maior em pacientes com DC do que nos controles (32,6% vs. 12,4%, respectivamente; p = 0,0008). Os pacientes com e sem SCBID foram semelhantes de acordo com os dados demográficos, marcadores inflamatórios sistêmicos e características da doença, exceto o fenótipo estenosante, mais comum nos pacientes com DC positivos para SCBID (43,3% vs. 19,3%; p = 0,015). Notavelmente, a concentração de CF foi significativamente mais elevada em pacientes positivos para SCBID (mediana de 485,8 vs.132,7 ug/g; p = 0,004). Os pacientes que apresentaram aumento da CF e doença estenosante tiveram um odds de 9,43 (IC de 95%, 3,04-11,31; p <0,0001) e 3,83 (95% CI, 1,54-6,75; p = 0,025), respectivamente, para o diagnóstico de SCBID. Em pacientes com DC, o SCBID é uma condição altamente prevalente. O fenótipo estenosante e o aumento da concentração de CF foram fortemente e independentemente associados com a presença de SCBID. O diagnóstico de SCBID seguido de tratamento direcionado é recomendado em pacientes com DC, especialmente no cenário de fenótipo estenosante e/ou na presença concomitante de inflamação intestinal. / Introduction: The small intestine bacterial overgrowth (SIBO) is defined as an increase in the number and/or change in the type of bacteria in the small intestine. In its pathogenesis it is important the damage on the ileocecal valve and anatomical abnormalities, both common in Crohn's disease (CD). The aim of this study was to determine the prevalence and predictors of SIBO in CD patients as well as to assess the relationship between SIBO and systemic and/or intestinal inflammation. In this cross-sectional study, between June 2013 and January 2015, 92 CD patients and 97 controls with non-chronic gastrointestinal complaints were assessed for presence of SIBO using the H2/CH4 glucose breath test. Multivariate logistic regression was performed to investigate the potential association between SIBO and demographic, disease-related data, systemic markers of inflammation (C-reactive protein and erythrocyte sedimentation rate), and biomarker of intestinal inflammation (fecal calprotectin concentration - FCC). The SIBO rate was significantly higher in CD patients than in the controls (32.6% vs. 12.4%, respectively, P=0.0008). Patients with and without SIBO were comparable according to demographics, systemic inflammatory biomarkers, and disease characteristics, except to the stricturing phenotype more common in the SIBO-positive CD patients (43.3% vs. 19.3%, P=0.015). Notably, FCC was significantly higher in SIBO-positive patients (median of 485.8 vs.132.7 μg/g; P = 0.004). Patients presenting increased FCC and stricturing disease had an odds of 9.43 (95% CI, 3.04-11.31; P <0.0001) and 3.83 (95% CI, 1.54-6.75; P=0.025) respectively, for SIBO diagnosis. Conclusions: In CD patients, SIBO is a highly prevalent condition. Stricturing phenotype and increased FCC were strongly and independently associated with the presence of SIBO. SIBO diagnostic work-up followed by directed treatment is recommended in CD patients, especially if stricturing disease or concurrent intestinal inflammation is present.

Submitted by Renata Lopes (renatasil82@gmail.com) on 2017-03-24T15:20:36Z No. of bitstreams: 1 ritadecassiaazevedocoutocornelio.pdf: 3370166 bytes, checksum: e79af08a636d474eca822391703dcc7c (MD5) / Approved for entry into archive by Adriana Oliveira (adriana.oliveira@ufjf.edu.br) on 2017-03-27T17:36:55Z (GMT) No. of bitstreams: 1 ritadecassiaazevedocoutocornelio.pdf: 3370166 bytes, checksum: e79af08a636d474eca822391703dcc7c (MD5) / Made available in DSpace on 2017-03-27T17:36:55Z (GMT). No. of bitstreams: 1 ritadecassiaazevedocoutocornelio.pdf: 3370166 bytes, checksum: e79af08a636d474eca822391703dcc7c (MD5) Previous issue date: 2008-06-26 / CONTEXTO: A não-adesão ao tratamento medicamentoso, em algum grau, ocorre universalmente. É uma das principais causas de insucesso no tratamento das doenças crônicas, tal como a doença de Crohn. OBJETIVO: Em doentes com doença de Crohn, avaliar a prevalência e os fatores de risco associados à baixa adesão ao tratamento medicamentoso. MÉTODOS: No período entre julho de 2006 e julho de 2007 foram incluídos prospectivamente, para avaliação da não-adesão ao tratamento, 100 doentes com doença de Crohn em seguimento clínico no ambulatório de doenças inflamatórias intestinais. Os pacientes responderam ao Teste de Medida de Adesão a Tratamentos de Morisky e Green, modificado. De acordo com este teste, os pacientes foram classificados em dois grupos, conforme o grau de adesão: adesão e não-adesão. A não-adesão foi subdividida em intencional e não-intencional. Variáveis clínicas, psicológicas e farmacoterapêuticas foram pesquisadas na busca de possíveis fatores associados à não-adesão. RESULTADOS: Entre os pacientes avaliados, 64% apresentaram escore compatível com não-adesão. O perfil mais frequente de não-adesão foi o do tipo não-intencional, e os pacientes mostraram ter conhecimento e motivação para o tratamento. Na comparação entre os dois grupos observou-se somente uma tendência a não-adesão entre os pacientes mais jovens (P = 0,07) e de raça não-branca (P = 0,06). Não houve correlação significativa entre o grau de adesão e as variáveis psicológicas e farmacoterapêuticas. CONCLUSÕES: Em pacientes com doença de Crohn, a prevalência de não-adesão ao tratamento medicamentoso é elevada (64%). Indivíduos jovens e aqueles não-brancos parecem ser os mais predispostos à não-adesão. Portanto, é preciso estar alerta para sua ocorrência e, caso necessário, implementar medidas que busquem aumentar o grau de adesão destes pacientes. / CONTEXT: Non-adherence to therapy, in any degree is a common event and occurs in several circumstances. It is one of most common cause of fail in therapy of chronic diseases and Crohn's disease is not an exception. OBJECTIVE: To evaluate in patients with Crohn's disease the prevalence and the risk factors to non-adherence to therapy. METHODS: From July 2006, for 12 months, were included prospectively, for non-adhesion to therapy 100 patients with Crohn's disease that were assisted in a Center for Inflammatory Bowel Diseases of Universitary Hospital of Federal University of Juiz de Fora, MG, in Brazil. A modified Morisky & Green Test for Measure of Adherence to Therapy was answered by all of them. According to test the patients were classified in two groups defined as adherence and non-adherence, respectively, and the last one was separated in intentional and non-intentional adhesion. Clinical, psychological and pharmacotherapeutics variables were sought to find the factors related to non-adherence. RESULTS: Sixty four percent of total group were noticed to have a score of non-adherence to therapy according to used test and non-intentional was the most common type of behavior in such patients, and they demonstrated to be conscious of therapy. The comparison of adherent and non-adherent patients displayed a significant tendency to occurrence of non-adherence in younger (P = 0,07) and in non-white patients (P = 0,06). No correlation was observed in comparison of psychological and pharmacotherapeutics variables and non-adherence. CONCLUSIONS: In patients with Crohn's disease the prevalence of non-adherence to therapy is high (64%). The younger and non-white patients have higher propensity to non-adherence. In such circumstances efforts should be made to look for strategies to deal with this sort of people suffering from Crohn's disease, trying to increase the degree of adherence in this sort of patients.

Bakgrund: Crohns sjukdom och ulcerös kolit är kroniska, inflammatoriska tarmsjukdomar som under de senaste decennierna har ökat påtagligt. De kan drabba människor i alla åldrar och ha en negativ påverkan på patienternas livskvalitet. Sjuksköterskan har en viktig roll i att se till att patienterna får tillräckligt med information och stöd för att klara av att sköta sin egenvård. Syfte: Syftet var att belysa hur patienter med Crohns sjukdom och ulcerös kolit upplevde symtomens påverkan i det dagliga livet och hur de anpassat sin tillvaro efter sjukdomen. Metod: En litteraturöversikt grundad på elva vårdvetenskapliga studier med kvalitativ design genomfördes. Studierna analyserades utifrån det valda syftet och nyckelfynd sammanställdes under två huvudteman. Resultat: Litteraturöversikten belyste hur deltagarna upplevde sjukdomarnas symtom och vilken påverkan de hade på det vardagliga livet. Här beskrevs påverkan på familjeliv, relationer, sociala sammanhang och arbetsliv. Sammanfattande utgjorde sjukdomarna ett hinder. Vidare beskrevs sjukdomarnas emotionella påverkan och hur deltagarna upplevde att de led av en osynlig sjukdom. Avslutningsvis visas vilka attityder deltagarna hade mot livet, vilka strategier som använts för att hantera sjukdomen och att acceptans av sjukdomen var viktig för att lära sig att leva med den. Diskussion: Resultatfynden har diskuterats utifrån Callista Roys adaptionsmodell och kopplats till andra vetenskapliga studier. Livet med en kronisk sjukdom innebär ständiga förändringar och sjuksköterskan kan genom att identifiera faktorer som påverkar adaptionen hjälpa patienten att uppnå balans. / Background: Crohn's disease and ulcerative colitis are chronic inflammatory bowel diseases that have increased significantly in recent decades. The diseases can debut at all ages, and they have a negative effect on the patients´ quality of life. A nurse has an important part of ensuring that patients receive sufficient information and support to manage their self-care. Aim: The purpose was to illuminate how patients with Crohn's disease and ulcerative colitis experienced the effects of the symptoms in their daily lives and how they adapted to the disease. Method: A literature review based on eleven nursing studies with qualitative design was conducted. The studies were analyzed based on the chosen purpose and key findings were compiled under two main themes. Results: The literature review illustrated how the participants experienced the symptoms of the disease and what impact they had on everyday life. The impact on family life, relationships, social contexts and working life were described. In summary, the disease was an obstacle. The emotional impact of the disease and how the participants perceived that they suffered from an invisible disease were described. Finally, what attitudes the participants had towards life, what strategies were used to manage the disease, and that acceptance of the disease was important for learning to handle it. Discussion: The findings have been discussed based on Callista Roys adaptation model and linked to other scientific studies. Life with a chronic disease involves constant changes, and the nurse can help the patient to achieve balance by identifying factors that affect the adaptation.

Philosophiae Doctor - PhD / Background: A subtype of inflammatory bowel disease, Crohn' s disease is thought to represent a complex interaction between environmental factors, a defective immune system, the gastrointestinal microbiome and genetic' susceptibility; however; the-prevalence of different susceptibility mutations appears to vary between population groups, implying distinctions in disease pathogenesis or risk. Vitamin D, signaling through the vitamin D receptor, appears to have numerous effects on the immune system, and deficiency has been shown to playa role in both the pathogenesis and severity of experimental inflammatory bowel disease. However, the literature surrounding the association between vitamin D concentrations and disease severity in Crohn's disease is limited, and no such literature exists in South Africa. Furthermore, a paucity of data exists on the racial variability of Crohn' s disease phenotype in the Western Cape population of South Africa, as well as environmental factors in childhood associated with future Crohn's disease development. Aims: The three primary aims of the study were to investigate: 1) the racial variability of, Crohn's disease phenotype, defined by the Montreal classification scheme, as well as Crohn's disease behavior, using predefined definitions, stratified as 'complicated' or 'uncomplicated', based on a cross-sectional study design; 2) the association between childhood environmental exposures and the subsequent development of Crohn's disease, with specific emphasis on the timing of exposure, based on a case-control study design; and 3) the association between serum 25(OH)D concentration with Crohn's disease activity, measured by the Harvey Bradshaw Index, based on a cross-sectional study design; in this process, various vitamin D thresholds for predicting a high disease activity score were investigated, and the serum 25(OH)D concentrations were compared with those of the healthy controls to evaluate the prevalence of vitamin D deficiency. Design: This was a case control study, as well as two cross-sectional evaluations of the case control study data, of all consecutive Crohn's disease patients (ages 18-70 years) seen between September 2011 and January 2013 during their normally scheduled appointments at Schuur Hospital and Tygerberg Hospital. Control subjects for the study were identified from the same populations giving rise to the Crohn's disease cases. An investigator-administrated questionnaire was used to identify numerous demographic and lifestyle variables, as well as childhood environmental exposures during three age intervals; 0-5, 6-10 and 11-18 years. Clinical variables at diagnosis and time of study enrolment were determined via a review of medical and pharmacy records, as well as clinical examination by the consulting gastroenterologist. Serum 25(OH)D was measured using the SIEMENS ADIVA Centaur® XP Vitamin D Immunoassay [Siemens Healthcare Diagnostics Inc., Tarrytown, NY, USA]. Vitamin D status was classified as either 'deficient' or 'sufficient', and was analyzed in 2 ways: ~20 ng/mL versus ~21 ng/mL; and ~29 ng/mL versus ~30 ng/mL, respectively. One year after study completion, a total of 40 (10%) randomly selected participants from the cohort completed the interviewer-administered questionnaire for a second time. A kappa statistic was used in order to measure the agreement between repeated data for the questionnaire. Only data pertaining to the three age intervals (0-5, 6-10 and 11-18 years) was extracted in this process. Results: One hundred and ninety four Crohn's disease patients and 213 controls meeting our inclusion criteria were identified; 35 (18%) and 19 (9%) were White, 152 (78%) and 177 (83%) were Coloured, and 7(4%) and 17 (8%) were South African Black, respectively. No subjects reported being of Asian or Indian ethnicity. Overall, 125 (31%) of the cohort were male. On multiple logistic regression analysis, Coloured Crohn's disease patients were significantly more likely to develop 'complicated' Crohn's disease (60% versus 9%, P = 0.023) during the disease course when compared to White Crohn's disease patients. In addition, significantly more White subjects had successfully discontinued cigarette smoking at study enrolment (31% versus 7% reduction, P = 0.02). No additional interracial differences were found. A low proportion inflammatory bowel diseases family history was observed among the Coloured and Black subjects. When evaluating childhood environmental exposures, multiple logistic regression analysis showed that during the age interval 6-10 years, never having consumed unpasteurized milk [(OR = 6.43; 95% Cl, 3.02-14.81), (K =0.79; 95% Cl, 0.39-1.00)] and never having a donkey, horse, sheep or cow on the property [(OR = 3.10; 95% Cl, 1.42-7.21), (K = 0.84; 95% Cl, 0.12-1.00)], significantly increased the risk of developing future Crohn's disease. During the age interval 11-18 years, an independent risk-association was identified for; never having consumed unpasteurized milk (OR = 2.60; 95% Cl, 1.17-6.10) and second-hand cigarette smoke exposure (OR = 1.93; 95% Cl, 1.13-3.35). For the vitamin Danalysis, 186 Crohn's disease patients and 199 control subjects met the study inclusion criteria. Overall, 113 (29%) of the cohort were male. Forty four percent of the cohort had a deficient vitamin D concentration (::;20 ng/ml.), no participants had severely deficient vitamin D concentrations, and 26% of the cohort had sufficient vitamin D concentrations (:::30 ng/mL). Fifty-three percent of the controls and 34% of the cases had vitamin D concentrations ::;20 ng/mL (P < 0.001). On multiple logistic regression analysis, higher Harvey Bradshaw Index scores and not having taken vitamin D supplementation in the six months prior to enrolment were identified as independent predictors of vitamin D deficiency in Crohn's disease patients; defined either as ::;20 ng/mL, or as ::;29 ng/mL (P < 0.001). Compared to patients with Harvey Bradshaw Index <5, those with Harvey Bradshaw Index 2:8 were 2.5-times more likely to have vitamin D concentrations ::;21 ng/mL (PR = 2.5; 95% Cl, 1.30-6.30). The risk was similar, though not as high, if deficiency was defined as ::;29ng/ml. (PR = 2.0; 95% Cl, 1.20-3.50). Conclusions: Coloured Crohn's disease patients were significantly more likely to develop 'complicated' Crohn's disease over time when compared to White Crohn's disease patients. Limited microbial exposures and exposure to second-hand cigarette smoke during childhood is associated with future development Crohn's diseases. However the inconsistencies between each age interval with regards to the identified risk factors may imply that the effect of different viruses or bacteria on the development of immune structures varies according to the timing of exposure. The finding that lower serum 25(OH)D was associated with moderate to severe Crohn's disease activity suggests that this patient population may benefit from vitamin D supplementation in order to achieve, or maintain a serum 25(OH)D concentration of at least 30 ng/mL.

Bakgrund: Inflammatorisk tarmsjukdom (IBD) är samlingsnamn för kroniska mag-och tarmsjukdomar och innefattar Crohns sjukdom (CD) samt Ulcerös kolit (UK). Båda sjukdomar löper i skov med återkommande, långvariga diarréer med förbättrings-och försämringsperioder och kan relateras till fysiska, psykiska samt sociala faktorer. Då uppenbara orsaker eller symtom ej finns är det på många sätt en dold sjukdom och kan skapa otillräcklig förståelse för patientens specifika behov. För att patienten ska få rätt stöd i hanteringen av sjukdomen samt få en god omvårdnad, bör sjuksköterskan att ha gott bemötande, tillräcklig kunskap där vården ges på ett personcentrerat, evidensbaserat sätt. Syfte: Syftet var att beskriva patienters upplevelse av att leva med inflammatorisk tarmsjukdom, IBD. Metod: En litteraturöversikt valdes som metod och baserades på tio kvalitativa artiklar. Databassökningar gjordes från CINAHL Complete och Medline with full text. Artiklarna analyserades enligt Fribergs fem steg. Resultat: I resultatet framkom sex teman utifrån patienternas upplevelse; påverkan av IBD på självbilden, påverkan av IBD i relationer och sociala sammanhang, patienters upplevelse av hälso- och sjukvården, känslomässig påverkan, utveckling och acceptans samt påverkan av IBD i arbetslivet. Diskussion: Resultatdiskussionen diskuterades av författarna utifrån Katie Erikssons caritativa teori om att lindra lidande och utifrån centrala fynd utifrån temaområden i resultatet. / Background: Inflammatory bowel disease (IBD) is the collective name for chronic gastrointestinal disorders and includes Crohn's disease (CD) and Ulcerative colitis (UK). Both diseases relapses with recurring, long-term diarrhea with improvement and deterioration periods and can be related to physical, mental and social factors. In the absence of obvious causes or symptoms, it is in many ways a hidden disease and can create scarce understanding of the patient's specific needs. In order for the patient to receive the right support in the management of the disease and to receive good nursing care, the nurse have to give good care, have sufficient knowledge and care for the patient in a person-centered, evidence-based way. Aim: The purpose was to describe the patient’s experiences of living with inflammatory bowel disease, IBD. Method: A literature review was chosen as the method and was based on ten qualitative articles. Database searches were performed from CINAHL Complete and Medline with full text. The articles were analyzed according to Friberg's five steps. Results: In the result, six themes emerged from the patients' experience; the influence of IBD on the self-image, the influence of IBD in relationships and social contexts, patients' experience of health care, emotional impact, development and acceptance, and the influence of IBD in working life. Discussion: The results discussion was discussed by the authors on the basis of Katie Eriksson's charitable theory of alleviating suffering and on the basis of central findings based on thematic areas in the result.

Les neutrophiles infiltrent la muqueuse colique inflammatoire en maladie de Crohn (CD). Cependant, on ignore l’existence d’une corrélation entre la sévérité endoscopique et la fréquence et/ou l’activation des neutrophiles et autres granulocytes. Une cohorte de 73 patients atteints de CD fut recrutée prospectivement. Les participants furent stratifiés selon la Classification de Montréal ou subdivisés selon le phénotype endoscopique (phénotype typique vs apparence endoscopique « UC-Like »). L’index d’Harvey Bradshaw (HBI) et le Simple Endoscopic score (SES-CD) furent calculés au moment de la coloscopie. La fréquence et l’expression de CD66b et de CD64 sur les granulocytes furent évaluées en cytométrie de flux sur des échantillons sanguins et des biopsies coliques. Le SES-CD corrélait avec l’expression du CD66b sur les neutrophiles coliques et du CD64 sur les neutrophiles circulants en présence de maladie active avec comportement inflammatoire (B1). Les fréquences des neutrophiles et des basophiles mais non des eosinophiles étaient augmentées au sein de la muqueuse inflammatoire, mais la fréquence des neutrophiles coliques n’était corrélée avec le SES-CD uniquement en présence d’un phénotype endoscopique « UC-like ». Deux scores d’activation granulocytaire étaient discriminant entre les individus avec maladie légère et sévère dans l’ensemble de la cohorte avec maladie active. L’activation des granulocytes dans le sang et la muqueuse colique corrèle avec le SES-CD dans des sous-groupes de patients avec une maladie B1, alors que les scores d’activation granulocytaire pourraient être pertinent cliniquement pour évaluer la sévérité de la maladie et possiblement avoir une valeur prognostique parmi les individus avec maladie active. / Neutrophils infiltrate the inflamed colon in Crohn’s disease (CD). However, correlation between endoscopic severity, and frequency and/or activation of neutrophils and other granulocytes like basophils and eosinophils remains to be investigated. A cohort of 73 CD patients was prospectively enrolled according to endoscopic severity and treatment history. Patients with active disease were stratified according to Montreal classification or subdivided into typical CD and UC-like endoscopic features. Harvey Bradshaw Index (HBI) and Simple Endoscopic score (SES-CD) were performed at the time of ileocolonoscopy. Frequency and expression of CD66b and CD64 on granulocytes were assessed in paired blood and colonic biopsies using flow cytometry. SES-CD correlated with neutrophil CD66b expression in mucosa but not blood and conversely, with neutrophil CD64 expression in blood but not mucosa in CD patients with inflammatory (B1) active disease. Frequencies of neutrophils and basophils but not eosinophils, increased in inflamed colon, but only in a subgroup of CD patients presenting “UC-like” endoscopic features were the frequencies of colonic neutrophils correlated with SES-CD. Furthermore, a neutrophil activation score (CD66b X CD64 on neutrophils) and a blood granulocyte score (CD66b on eosinophils X CD64 on neutrophils) discriminated between mild and severe disease in the entire cohort of patients with active disease. Activation of granulocytes in blood and/or mucosa correlated with SES-CD in subgroups of patients with B1 inflammatory disease while granulocyte activation scoring systems may be clinically relevant to evaluate disease severity and predict prognosis in the entire cohort of active disease patients.